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Monday, October 13, 2008

Well, we're back in Cook's. This time in the epilepsy monitoring unit. Thankfully we got medical intervention quick enough that Hannah did not go into respiratory distress so she did not have to be intubated. She's on regular oxygen. Right now they are about to start another dilantin drip. She's resting.

What a night! What a weekend! On Friday Hannah was her happy go lucky self. No illness at all. She had a blast Friday. Friday night out of the blue she has a seizure that lasts over 5 minutes and we end up in ER. I've already whined about that experience so I won't do it again. Saturday she did fine. Nothing out of the ordinary. Sunday she coughed all day but never ran a fever. About 10:30 she had a seizure that lasted 4 1/2 minutes. She came out of it but didn't start breathing again right away. David called 911 and she started breathing. Then she went into the second seizure right after that and it lasted nearly 6 minutes so I gave her diastat and we made a trip to Hillsboro ER in an ambulance. While at the ER Hannah did not seize anymore and all her bloodwork and x-ray's came back alright. They sent us home. We were home 30 minutes when she went into another seizure and it lasted over 6 minutes. We went back to the ER and they started a dilantin drip and sent us to Cook's in an ambulance.

We got to Cook's around 4 a.m. and was in ER until 9:30 a.m. We are in P410 in Epilepsy monitoring unit. Don't have alot of information right now. They are trying to make sure she doesn't have a status. We may get to see the epi that we weren't scheduled to see until April while we are in here. Also, it looks like they are finally going to put her on topomax again.

I'll post again when we have more information. Please pray for Hannah and for David and I. We're so tired. We were up the entire night and didn't get much sleep. Also, pray for the boys. They are both being so brave but I know they are worried. Thanks.

Next....

The neuro just came in and we had a long chat. He does not want us back on Topomax. He thinks we need to try other med combinations before we resort to going back on topomax. He's reasoning is that Hannah's biggest problem outside of seizures is development and when we took her off topomax her world opened up. I agree, but a part of me wants to go back to what works no matter the cost. I so wish I could know what Hannah would prefer. (((sigh))) Right now, the plan is to put her on Keppra. I'm very nervous about it because everyone I know that has a kid on it has told me horror stories about it. Saying it made thier kid psychotic, etc. He promised me that if we saw that it was going to affect Hannah that way we'd go off of it and he'd put her back on topomax. He says that he sees more people do well on keppra than don't. Anyway, they're about to hook her up to continual EEg and video EEg. When we get the results form all that we'll make a decision. Please pray we make the right one. I'll update when I can. She's still resting well.

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Hannah & Koolio

Hannah in hospital and Koolio helping her feel better

Hannah's Story

Hannah is a 7 yr old little girl who has epilepsy, autism, mild cerebral palsy, SID, and CLD. She attends school where she is in a special needs classroom. She receives occupational, physical, and speech therapy. Hannah is confined to home a lot due to respiratory illness’s and in the summer due to lack of body temperature control, a side effect of her seizure medication. None of which can keep her down. She's one strong little girl. I think you'll enjoy getting to know her...

Koolio

Email from Koolio...(Hannah's service dog)

Hannah, Yoda here with my friend Koolio who wants to speak with you. He is a pretty cool dude that Koolio and you are so lucky he is going to be your partner!

Hey Hannah,

Koolio here! How are ya girl? I am so excited we are partners! I feel like I already know you because I have been getting to know how you smell. I have been working so very hard to be your best friend and help out when you need me. I want to sleep in your room, and even though I am a guy, well you can play dress up with me if you want to and I am sure I can sit through a tea party or two. Whatever you want to do is fine by me. I am just glad to be with you! Hurry up and come here to Ohio because I am waiting for you! Counting the minutes..... xoxoxoxoxoxo Koolio